What to Do
Be Honest & Truthful
Your patients will respect your honesty, even if you do not have all of the answers.
Androgen insensitivity syndrome is a pretty rare condition. When you were in medical school, you had one slide on it. While it’s very important to me, unless you specialize in it, I don’t expect you to be an expert in it.
That being said, we do pop up from time to time. Remember to be kind, always tell whole truths, and never lie to your patients. Lies only protect yourself and never help your patients. You got this.
Be Compassionate & Empathetic
Remember to do no harm. When talking to your patients about AIS, imagine that you’re explaining it to yourself.
How would you like to be told? How would you feel to know you are different? Help the parents and the patients to understand that it’s ok. It’s not life threatening. It’s just different, and different is neither good nor bad. It’s just how genetics are sometimes. There’s a grace in accepting who you are that comes after years and years of acceptance, but your patients are about 12k light years away from that grace right now. They’re just all raw nerve endings and pain. Just think how you would want to be told the truth. It will be ok.
Be a partner
It’s easier to sit behind a desk and use medical jargon. It’s harder to get on the same level and talk as equals.
In general, people who are intersex do not have great relationships with the medical community. We aren’t historically treated very well and generally mistrust doctors thanks to years of abuse and trauma from being treated as case studies and not as people. I hope you can help change that stigma by being kind to intersex patients.
Be and advocate. Be a partner. Just listen to our worries, and our knowledge. Actually listen. That alone would do so much good. Just reading this website already means you’re trying to do good, and I thank you for that.
Ask for Consent
Just ask. I know the human body is old news to you, but we have a lot of trauma surrounding ours.
If you’re going to examine our pelvis, talk about it first with our clothes on. Explain each step and why it’s important. Give us time to process. Respect our right to refuse, also. Give us time to process, as well. I’m loud and will tell you no if I’m uncomfortable right away, but many people will just sit there quietly and shut down if they’re uncomfortable. Learn the signs, and never assume consent.
Treat us the same as anyone else
I know I’m a little different, but as much as you can, please treat me the same as any other patient.
I don’t have a uterus, so it would be nice to mark on my chart to not ask about my period every time I go to the doctor’s office. Other than that, I have the same blood work as everyone else. I have to worry about blood pressure and cholesterol and weight gain. We’re still people and we deserve basic access to healthcare.
Use appropriate Terms
It can be hard to keep up with all of the modern terminology as it keeps changing. Here’s one simple trick to always stay on top: Just ask.
What are your preferred pronouns? What do you preferrer to be called? Are there any terms that you find inappropriate that I should mark in your chart to stay away from? If you find yourself at a loss, just be direct and honest; it shows you care.
